INDIANAPOLIS (WISH) — A leading advocate for people with disabilities said Monday that families who use the attendant care program need to talk to their Medicaid providers about their options.

The Family and Social Services Administration in January announced parents and spouses will no longer be eligible for reimbursement under the attendant care program after June 30. It was one of several measures the agency said it would pursue after officials found they were short nearly $1 billion in Medicaid funding.

If families wish to continue using the program for medically complex children, they will have to turn over daily care duties to an outside provider such as a skilled nurse. Parents who wish to continue to provide services on their own will have to use the structured family caregiving program instead.

According to the FSSA, the main difference between the two programs is monetary. The attendant care program pays Medicaid service providers $34.36 per hour, which the provider then splits with whoever provides the actual services, a category that, for now, includes parents. Under structured family caregiving, the reimbursement rate is between $77.54 and $133.44 per day, depending on the level of disability. FSSA officials said about 21,000 people use the attendant care program, of which roughly 1,600 are under the age of 18.

ARC of Indiana CEO Kim Dodson told News 8 that structured family caregiving will be able to meet the needs of most of the families who use the attendant care program. She said those whose children require 24-hour care, however, face very few options.

“So many of these conditions are life-threatening. The smallest mistake could lead to the death of their loved ones,” she said. “So they’re going to have to make a decision on whether or not they can trust their loved one into somebody else’s care. If they don’t, they’re going to have to make a really hard choice of, do they stay home and have a difficult time making ends meet, or do they need to look at options such as a children’s nursing home or a long-term care facility.”

In the final hours of the 2024 legislative session, state lawmakers approved a bill that sets new transparency and reporting requirements for the structured family caregiving transition and FSSA’s Medicaid operations more broadly. The bill also requires the FSSA to set a minimum share of reimbursement for families under structured family caregiving. Lawmakers said agency officials told them that the figure likely will be 50 or 60%. Dodson said that’s typical for similar programs in other states.

Dodson said families need to talk to their caregivers and Medicaid providers about what works for them. She said they should also pay close attention to any hearings about the program transition this summer, ask questions, and talk to their state lawmakers about what is and is not working.

“This is where families are going to have to be very, very open and honest to looking at what might be best for their families,” she said. “They need to be talking to their care manager, talking about what options exist in their community for a provider both for attendant care and structured family caregiving.”